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- Balanced genomics data policy is needed for NIH proposal
The CAP cautioned against overly strict policies that could hinder biomedical research in a recent letter regarding proposed National Institutes of Health (NIH) data policies affecting genomic and health data access.
The big picture: We support the NIH’s goal to share data and mitigate security risks, but the proposal goes too far.
The impact: Our concerns include potential limits on research involving pathology biospecimens, including:
- It’s unclear whether the policies apply only to NIH-funded research.
- New definitions could confuse researchers and biobanks.
- Consent requirements might limit the use of archival specimens.
- Policies could exceed federal standards, adding a regulatory burden.
What we’re saying: We support data protections but urge the NIH to clarify policy scope and applicability, align consent requirements with federal rules, and avoid access limits that impede research.
Go deeper: Read our full comment letter.